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Author
Topic: I think I have made some progress (Read 1539 times)

I am pretty sure I got infected in 94 at the age of 23 by a guy who probably suspected he was positive but did nothing about it. Pretty much everything about him was a lie but being the naive and shy person I was, I did not pick up on it till it was too late. I had never encountered someone so adept at manipulation or intentionally cruel before him. I am an only child and around this time my father had left my mother, leaving her desolate and heartbroken and forgetting that I even existed. I had no one to turn to and I was isolated and scared. $#itbag, as I refer to him, was in jail and I was living with my mother when I picked up my meds for the first time. I can remember locking the door to the room I grew up in and taking them all out of the bag and lining them all up on my bed. Reading all the foreign names and then breaking down in tears because I knew from that day forward I would be dependent on these pills, for the rest of my life. I have spent a lot of time hiding my pain and my pills, not doing things I enjoyed for fear of being found out or getting sick. I finally told my mother I was positive in 98 after having my son with $#itbag. In 99, I met a poz guy and we had kids in 03. I have recently moved again with my kids to where I grew up so that I can try and get them help with education. Still not many people know of my status but I am reaching out to local ASO's again. I recently spoke to some medical students regarding the emotional affects of being positive.

This morning, my meds got delivered by UPS. I felt like I won the lottery. I found myself hugging the box. I took a picture of the box. The box was too big to take a selfie with it or I would of, lol. I am not sure if I have lost my mind or I am getting old or today I just feel thankful for the meds that keep me going. They suck and they are a pain the in the ass, literally, but we are all here and hopefully not feeling too isolated and alone.

When we first started meds, I went into this sort of robot mode - think color-coded charts and watch alarms, she was on so many meds. I spent many days sobbing, force-feeding her meds, getting frustrated when she'd spit them out, or worse, throw them back up. It was so unfair, not at all what I had dreamed or planned, but reality none the less. So, we built walls of protection around her and let very few people in.

As she got older, around 3 or 4, we were down to just Zerit, Kaletra, and Susteva. I would mix her Zerit and Kaletra, watch it sizzle, cut it with milk, hand it to her, watch her chug it like a champ and go on her merry way. And still I sobbed. How unfair it was that meds were so much a part of her life that she took them without a second thought. That she trusted me to do what was best for her when I didn't trust myself. And what would happen if she stopped?

She's now 13. She's on Kaletra and Epzicom - both pills. Most times she remembers to take them without being reminded. She's growing up, has friends, and will start high school next year. With each new set back, frustration mounts. With each battle overcome, joy mounts higher.

It's no longer me managing her virus, but teaching her to master it. I have learned acceptance because i must teach her to accept. I had to learn to adapt because i must teach her to adapt. I must be flexible because she must be flexible. Too soon i'll pass the baton completely to her. It will be up to her how she goes forward. The walls haven't come down, but we are allowing more people in. We haven't encountered the cruelty that I know so many of you have. I know it will come. And when it does, she will sob...and so will I.

What a beautiful sentiments. You both sound like you were cut from the same mold.

Angel, your post is heartwarming and uplifting.

Mum, I swear that picture on my IB is not going anywhere. Every day it inspires me and makes me feel good that people like you and Mini and Anegel love your families and share your lives with others so they too can feel the love of the world.

Minismom-Wow, I can't believe Mini is 13 already. You have done such an amazing job helping her through all the ups and downs. She is truly blessed to have you. It boggles the mind how strong we can be when we need to be.

Hi BT- I missed you. How is work and school?

Thank you, everyone, for your replies. It was such a good feeling to have all my meds delivered correctly and not have to call or scan them all in individually or go after them myself.It is nice to have one less thing to worry about. ( I am in Mass, if anyone wants their info, they do ship to other states, as well) That same day my doc called and changed me to Complera and I got another delivery on Monday. Woot! Woot! I found out in one of the meetings I attended at the local ASO, that I am considered med experienced and that many people are still struggling to adhere to their regimen for multiple reasons. I wish they could see that it even though it sucks, it does pay off in the long run, if they just stick with it. Hope everyone is having a good day!Snow

I just got a call from Sue at my old pharmacy saying that she just refilled one of my old meds. I inform her that I am not taking it anymore and not using her pharmacy and she asked me " So should I put it back? "